Life with a Side of Autism

 My daughter has autism, or as I prefer to say it, my daughter is autistic. It's part of who she 'is', not what she 'has'.

Barely saying a word

She's six years old now and we first started noticing things were wrong when she was around two. I began to be very conscious of the fact that she didn't seem to be developing typically. It was really her speech that was the issue at first.

Her older brother was such an early talker by comparison; by seventeen or eighteen months you could have a full-on proper conversation with him, yet my daughter even at around two was barely saying a word. If she did say a particular word, she might say it once and then never say it again.

It just didn't seem right, and then she started making these strange noises down her nose. It was if she was saying words but they were all muffled and being transmitted through her nose. You could almost tell what she was saying but obviously, it wasn't normal!

Not crossed my mind

So, I asked the health visitor if it was possible to be referred to a speech and language therapist. I didn't know what it might be about or if there was an issue, and autism certainly hadn't crossed my mind. I hold my hands up and say that, despite having Child Development training and an Early Years degree, autism was never really something that was spoken about. Before I had kids myself, I worked professionally for many years with children.

I'd say I worked with several children who were on the spectrum but who were not at that time diagnosed. I certainly don't remember knowingly working with a child who had a diagnosis.

Development checks

It took some months to get to see the speech and language therapist and it was she who told us that she believed our daughter was showing some signs of autism. In the meantime we had also been seen again by the health visitor to do some development checks, the ones they do with children around the age of two; 'can you build together these blocks', that kind of thing.

The results of these showed that our daughter was indeed a little bit behind in a few developmental areas, but it hadn't really crossed my mind that there was a real problem.

All children are different

In a way, even though I had worked with lots of children, we only had our elder child - our son - to refer to. I think maybe I knew, but I kept telling myself all children are different and they all develop at their own pace, because that's what I've been telling other parents over the years, and yet it didn't even register until we went to the speech therapist.

Not understanding the instructions

I remember her saying to us, "Look can you see how she is flapping her hands?" - a form of 'stimming', and I was saying, "She's not flapping her hands, she's waving!" But she was convinced she was flapping. This, she told us, was 'stimming' - a self-stimulatory behaviour, such as repeated physical movements, or sounds, or moving of objects - something very prevalent in people with autism spectrum disorders.

There were other things too she picked up on. She was asking her to do a number of tasks and she either wouldn't do them or wasn't understanding the instructions.

From initial concerns to a final outcome

We went away thinking, 'it can't be autism', and that she'd be fine once she started talking. However, we then got referred on to a paediatrician and she agreed with the speech therapist's opinion. Only then did we really think, hang on, there must be something in this, and began seriously reading up on autism. From initial concerns to the actual diagnosis it probably took about eighteen months; she was three years and three months old when we had the diagnosis confirmed.

This is a relatively short time span compared to many people who are diagnosed, whatever their age. A lot of people raise concerns and then nothing happens, or they don't get any kind of outcome or conclusion, and sometimes this can be for years.

Thriving at school

She's now six, and she goes to a special school. It's not autism-specific but a school for children with learning difficulties and also a whole range of issues, and she's absolutely thriving here. She had been to a mainstream nursery but then instead of transferring to its main school, we kept her back another year on the advice of the school and the various professionals we were involved with. She stayed there while we got everything in place for her including her educational plan and then she started at the school she's at last September.

She's in a class of children of a similar age - all five, six or seven - and classes are based on ability and not on age, it's effectively a Year One class.

In the right place - and happy

We'll see how she goes; there's a follow-on high school a few minutes away that, all being well, she will transfer to in the fullness of time. She'll be in education for a good few years, potentially up to nineteen, maybe even twenty-one. But if ever the point came that we thought she would benefit more from being in mainstream school then we would certainly consider moving her. To be honest though, the way things are going, she's in exactly the right place for her - and happy there.

Playing with others

In terms of friends, my daughter doesn't really 'do' friends as such; she has not yet developed that social skill really. She's only just starting to interact with others in her class in a more meaningful way, although she said to me just today, that she played 'knights' - as in knights in shining armour - with someone at school. So she's starting to get a concept of playing with others which is great. Of course, she's never really far from her iPad, and it's a way of her learning loads of things that we haven't taught her. She learned all the names of the planets last week, and the order of them all, which is pretty cool.

It's come from watching the same song about it, a video on YouTube, over and over and over.  She's also become obsessed with 'Paw Patrol' at the moment and she's just had lots more of those toys for her birthday. Overall, she's pretty solitary, but she does like to interact with us, and if we are doing something that she's interested in it will hold her attention completely. If she's not interested though, then you've got no chance and she'll say "No, not like it". 

Be the squeaky wheel

For any parent who has concerns about their child, I would simply say this; you do have to be your child's advocate; you have to be the 'squeaky wheel' as I like to put it. Sometimes it's the parents that make the most noise that get the most attention. You know your child best, you are the expert on your child. Some professionals and so-called experts will probably try to tell you other things, but if you feel something isn't right, doesn't sit right with you, or you're just not sure, then you just have to go and ask.

Ask your GP or your health visitor if your child is younger, or, even if they are at nursery or at school, you can ask the teachers or ask the SENCO (Special Educational Needs Co-ordinator) for some advice to see where to go next. Ask them if they have noticed, because sometimes the school won't realise that they have noticed, until someone else brings it up, and then they might say, 'yes, you know what, actually we have noticed that too' and then suddenly there's two of you on the same side. That can really give more weight to your concerns.

A wide spectrum

As I say, it can take time to get clarity on the situation and potentially a diagnosis that then makes sense of everything, and can help you and your child. Whilst, on one hand, I can't believe it can be so hard to just be able to be sure yourself of these things, but on the other hand, I can. Right now, with my elder child aged ten, I wonder if he also has an ASD. It has been quite a while now since we first raised concerns about him, and began to 'question his neurodiversity'.

We'll see how things develop, but the autistic spectrum is clearly very wide, and it's entirely possible that my son is on there. He may well be at the 'milder' end, but I do wonder if he is on there nonetheless.

Kelly Kemp, wife, mother and blogger. Read more about 'life with a side of autism' at her blog School Runs and Shopping Trolleys